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Susannah Fox

@susannahrfox.bsky.social
346 followers 229 following 200 posts

Author, REBEL HEALTH. Amateur sunflower farmer. There are people who would love to help you, if only they knew how to find you.

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Susannah Fox @susannahrfox.bsky.social · 31/07/2026
Today's crop 🌻
Orange sunflower flanked by two unopened budsUnopened bud of a sunflower appears attached like a conjoined twin to the back of an orange sunflower in bloomSunflower bud about to open. Yellow petals still folded around a brown disk with spiky green leaves all around it.
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Susannah Fox @susannahrfox.bsky.social · 31/07/2026
Reading: J&J reaches sweeping talc deal that could end decade of litigation, by Dietrich Knauth (Reuters) www.reuters.com/business/hea...
reuters.com
J&J reaches sweeping talc deal that could end decade of litigation
Johnson & Johnson ​said on Monday it would pay an estimated $5.5 billion to resolve tens of thousands of lawsuits alleging its baby powder and ‌other talc products cause ovarian cancer, in a landmark ...
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f16col.bsky.social @f16col.bsky.social · 12/07/2025
undark.org/2025/07/08/b...
undark.org
Book Review: The Tainted Legacy of an Iconic Health Care Giant
"No More Tears," by Gardiner Harris, is a scathing expose of Johnson & Johnson and its many missteps and transgressions.
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Silly Goose Baker @bakedbyramal.bsky.social · 29/07/2026
Everyone should read No More Tears by Gardiner Harris for insight into the decades long coverup of the asbestos in the talcum powder
A hand holding a book entitled “No More Tears” by Gardiner Harris
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Susannah Fox @susannahrfox.bsky.social · 14/07/2026
Only 29% of U.S. adults say most people can be trusted. Yet 80% have looked online for peer advice. Survey results: susannahfox.com/2026/07/14/w...
susannahfox.com
We don’t trust each other. We still need each other.
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Susannah Fox @susannahrfox.bsky.social · 16/06/2026
I admit I love a "gotcha" survey question. Gallup asked people if they had used an AI-enabled app or platform in the past week and fully 50% said no, they had not. In fact, 99% said they used at least one of 6 AI-enabled products in the past week.
Nearly all Americans use at least one AI-enabled product weekly. Bar chart showing the in the past seven days, only 1% of U.S. adults used zero, 2% used one, 5% used two, 9% used three, 20% used four, 31% used five, and 31% used all six AI-enable products listed (personal virtual assistant like Alexa or Siri; navigation apps; weather apps; social media, streaming services like Netflix, and online shopping apps or sites). Survey conducted by Telescope/Gallup Nov 26-Dec 4, 2024
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Susannah Fox @susannahrfox.bsky.social · 10/06/2026
This study caught my eye today: Predictors of Long-Term Outcomes in Hypertrophic Cardiomyopathy (JAMA) jamanetwork.com/journals/jam...
jamanetwork.com
Hypertrophic Cardiomyopathy Registry (HCMR) Outcomes
This cohort study examines whether combining clinical history, imaging, and genetic and blood markers could predict risk of adverse events in patients with hypertrophic cardiomyopathy, including sudde...
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Susannah Fox @susannahrfox.bsky.social · 13/04/2026
Thanks to @epatientdave.bsky.social I am adding Flok to my ongoing list of patient-, survivor-, caregiver-led innovations. Flok is both a community for people with inherited metabolic disorders AND a research platform: flok.org
flok.org
flok | Innovation of Care
flok is an app and research platform designed to improve the care and treatment of inborn errors of protein metabolism.
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Susannah Fox @susannahrfox.bsky.social · 06/04/2026
"When you speak up, there is a chance you move the needle, and your courageous actions can compound to create greater institutional courage." - Resa E. Lewiss, MD www.insidehighered.com/opinion/care...
insidehighered.com
Advice for Working With an Institutional Enabler (opinion)
If you work with someone who dismisses allegations of unprofessional workplace behaviors, you do have options.
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Susannah Fox @susannahrfox.bsky.social · 20/03/2026
Boredom and anger are a potent mix. Especially when a chemist is stuck at home with a problem she knows she can solve. A dose of inspiration: susannahfox.com/2026/03/20/w...
susannahfox.com
Wow! How? StomaEase
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Susannah Fox @susannahrfox.bsky.social · 19/03/2026
The news is terrible so here's a sunflower growing against all odds at the top of a mountain near Santa Barbara, CA 🌻
A yellow sunflower growing in an unlikely spot -- the extremely dry rocky side of a mountain with little vegetation nearby.Closer picture of the unlikely sunflower growing in dry, rocky soil
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Susannah Fox @susannahrfox.bsky.social · 07/03/2026
The videocast of Rare Disease Day at NIH is now available. My pick: session on how AI can be leveraged in rare disease clinical care starts around 2:15 videocast.nih.gov/watch/8ada3c...
videocast.nih.gov
NIH VideoCast - Rare Disease Day at NIH 2026
There are more than 10,000 known rare diseases and only a few hundred have safe, effective treatments. In the United States, rare diseases affect millions of people. On February 27, 2026, NIH will hos...
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Susannah Fox @susannahrfox.bsky.social · 26/02/2026
My favorite annual symposium, Rare Disease Day at NIH, will be livestreamed: videocast.nih.gov/event-calendar
videocast.nih.gov
NIH VideoCast
videocast.nih.gov
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Susannah Fox @susannahrfox.bsky.social · 23/02/2026
Loved this Freakonomics episode about repurposing drugs to treat rare diseases: freakonomics.com/podcast/are-...
freakonomics.com
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A-Danielle Grenier · Ma vie de zèbre @adangrenier.bsky.social · 22/02/2026
En cette dernière semaine du mois de sensibilisation aux maladies rares, je tiens à rendre hommage à la force incroyable des personnes qui en sont atteintes. 🦓👊 #ZebraStrong #ShowYourRare
Texte blanc sur fond noir "Forte comme un zèbre" avec un petit zèbre style cartoon et le logo de Ma vie de zèbre en petit dans le coin inférieur droit.Texte blanc sur fond noir "Fort comme un zèbre" avec un petit zèbre style cartoon et le logo de Ma vie de zèbre en petit dans le coin inférieur droit.
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Susannah Fox @susannahrfox.bsky.social · 20/02/2026
Rare Disease Week is a chance for patients, advocates, scientists, clinicians, & policymakers to learn from each other about how to build solutions on the frontiers of medicine. Events happening this week...
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Susannah Fox @susannahrfox.bsky.social · 12/02/2026
"When you imagine the consumer as a patient, opacity feels predatory. When you imagine the consumer as an employer, opacity can feel efficient." - Alec Wade Ginsberg, PharmD, RPh (aka Drugstore Cowboy) drugstorecowboy.com/p/ali-frazie...
drugstorecowboy.com
Ali–Frazier: Pharma Edition
Mark Cuban's face-off with Optum's CEO was really about who healthcare is actually for.
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JAMA @jama.com · 30/12/2025
A growing movement seeks to ensure all clinicians are equipped to care for older adults. Learn more about the push for universal #geriatrics training. ja.ma/3YNe3g5
ja.ma
Geriatrics Training for All
This Medical News article discusses challenges and progress toward more widespread geriatrics training in medical school, residency, and health systems.
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Pew Research Center @pewresearch.org · 12/12/2025
Most Americans say government has a responsibility to ensure health care coverage: pewrsr.ch/495emca
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Susannah Fox @susannahrfox.bsky.social · 10/12/2025
Digging into TROUBLE MAKER by @cktroublemaker.bsky.social - had to get the hardback after listening to her description of photos on the “He’s Just…” podcast w Jules Douge
Book cover for the American Way of Death by Jessica MitfordYellow piece of paper with text: Welcome to Powell’s Books! Handwritten notes about the journalism sectionBook cover for Trouble Maker by Carla Kaplan
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Carla Kaplan @cktroublemaker.bsky.social · 26/11/2025
Publication day today! Perfect timing for this wonderful excerpt in Town & Country: www.townandcountrymag.com/leisure/arts...
townandcountrymag.com
Jessica Mitford Was Raised to Be an Aristocrat. Instead, She Became a Communist.
How a daughter of one of England’s most storied families ended up on the other side of the world—and the political spectrum—from her parents and infamous siblings.
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Mara Wilson @marawilson.bsky.social · 12/11/2025
So proud of my dear friend Sam for writing this. So furious he has to go through it. www.nytimes.com/2025/11/11/o...
nytimes.com
Opinion | Cancer Patients Like Me Are Casualties of MAHA’s Hypocrisy
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Timothy Caulfield @caulfieldtim.bsky.social · 30/10/2025
The power of lies. The power of doubtmongering. Misinformation kills. The decrease in confidence in the (much researched, safe & tremendously effective) MMR vaccine...?👇 www.annenbergpublicpolicycenter.org/public-not-h... via @asc.upenn.edu
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SSRS @ssrsresearch.bsky.social · 30/10/2025
From social media platforms to gaming communities, digital life surrounds adolescent boys. To better understand the impact of this digital lifestyle, Common Sense surveyed more than 1,000 U.S. boys ages 11–17 on the SSRS Opinion Panel. www.commonsensemedia.org/research/boy...
commonsensemedia.org
Boys in the Digital Wild: Online Culture, Identity, and Well-Being
From social media to gaming, apps, and more, adolescent boys spend hours each day online. Our new research reveals how this relates to their identities, relationships, and emotional well-being.
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Susannah Fox @susannahrfox.bsky.social · 23/10/2025
"Question: what HAPPENS when you stand your ground and tell the hospital it’s not safe for my father to be sent home? The forces pushing for discharge can be economic, and that’s a spine-stiffener for some hospitals." - @epatientdave.bsky.social susannahfox.com/2025/10/22/c...
susannahfox.com
Caregiver Survival Guide
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Bethany Brookshire @beebrookshire.bsky.social · 22/10/2025
I have been traveling and today I present to you...the thing I saw in the Frankfurt airport. Is it efficient? Undeniably. Does it probably work better than the normal way? Oh certainly. Produce less of a mess? Probably? But the existence of Condiment Udders gives me a deep, aghast disquiet.
A hotdog and pretzel stand with large hanging bottles of mustard, ketchup, and mayonnaise. The bottoms contain squeeze tubes to dispense the condiments.
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Susannah Fox @susannahrfox.bsky.social · 22/10/2025
If you are a caregiver, learn these magic words: “It is not safe for my loved one to return home.” More peer health advice: susannahfox.com/2025/10/22/c...
susannahfox.com
Caregiver Survival Guide
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Susannah Fox @susannahrfox.bsky.social · 19/10/2025
Sunday morning read: www.npr.org/2025/10/18/n...
npr.org
A caregiver's survival guide: Advice from people who've been there
Family caregivers offer their wit, wisdom and survival tips for the hardest unpaid job in America.
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Susannah Fox @susannahrfox.bsky.social · 17/10/2025
1+ million clinical trials are conducted annually. A shocking few ask patients (or even clinicians) for input on physical, economic, and psychological burdens, much less the questions they hope to answer. What happens? Failure. Waste. What can be done? Read: susannahfox.com/2025/10/16/p...
susannahfox.com
Patient Input on Clinical Trials
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Susannah Fox @susannahrfox.bsky.social · 14/10/2025
There's precedent for patients demanding - and winning - access to a drug that saved them in a clinical trial: Gleevec. I hope patients win here, too.
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Susannah Fox @susannahrfox.bsky.social · 14/10/2025
Caregiving in America: While caregiving is more prevalent among older adults, a full quarter (27%) of 18- to 29-year-olds report providing unpaid care to a friend or loved one. The average age of caregivers in the U.S. is 50. susannahfox.com/2025/09/25/c...
GenZ are caregivers too: 27% of 18- to 29-year-olds report providing unpaid care to a friend or loved one in the year prior to the survey. Intensity drivers of younger and older caregivers: Caregivers under age 50 are more likely to experience family disagreements, money concerns, worrying that it is all too much, and feeling stressed out or depressed. Older caregivers are more likely to say they are confident navigating money and benefits for others. - ARCHANGELS
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Jaime Garcia Iglesias @jgarciaiglesias.bsky.social · 10/09/2025
What an honour to have our book on HIV and COVID nominated for the Foundation of Sociology of Health and Illness with such amazing books including the fab Selling Immunity! @bsa-medsoc.bsky.social @nagingtonuom.bsky.social
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Susannah Fox @susannahrfox.bsky.social · 05/09/2025
Peer support is powerful: "We were talking about, “What’s the thing that’s keeping you up at night right now?” By us saying them, it allowed for (others to say), “Yeah, I’m dealing with that too.” Then you can collaborate on it." www.nytimes.com/athletic/659...
nytimes.com
Dan Quinn’s unusual exercise brought the Commanders closer — and helped them surprise the NFL
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Susannah Fox @susannahrfox.bsky.social · 30/08/2025
🌻
Sunflower just starting to bloom. Spiky green leaves cover most of the disk. Five yellow petals are unfloldedSunflower half open, with a half circle of florets visible on the center diskSunflower almost fully in bloom. Three yellow petals are still folded over the brown disk of florets
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Susannah Fox @susannahrfox.bsky.social · 29/08/2025
At the recent Moebius Syndrome Foundation conference, Kathleen Bogart, PhD, led a discussion about ableism and asked, "How would our world be different if everyone had Moebius?" A child spoke up first: "People would be kinder to each other." susannahfox.com/2025/08/29/w...
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Susannah Fox @susannahrfox.bsky.social · 21/08/2025
Mental Health Tech Isn’t Reaching Rural Youth, by Ben Miller open.substack.com/pub/mentalhe...
open.substack.com
Mental Health Tech Isn’t Reaching Rural Youth
The tools are there. Access, trust, and relevance may not be.
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Susannah Fox @susannahrfox.bsky.social · 16/08/2025
Jill Dopf Viles died one month before her book, MANUFACTURING MY MIRACLE, was released so I'm doing what I can to lift up her incredible story susannahfox.com/2025/08/15/j...
susannahfox.com
Jill Dopf Viles, DIY scientist
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Susannah Fox @susannahrfox.bsky.social · 15/08/2025
Velvet Queen sunflower
Orange petals surround a brown disk, two bees harvesting the pollen
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Susannah Fox @susannahrfox.bsky.social · 15/08/2025
Potential, cracking open
Tight green sunflower bud Sunflower bud starting to open, spiky green leaves surround yellow petals
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Susannah Fox @susannahrfox.bsky.social · 07/08/2025
What do you do when clinicians dismiss your concerns? Frans Frielink dug into the medical literature, talked with other patients, and made the connections nobody else saw. Great #RebelHealth story: globalliver.org/from-patient...
globalliver.org
From Patient to Pioneer: Frans Frielink’s Journey with Alpha-1 MZ - Global Liver Institute
My name is Frans Frielink, and I have over 40 years of experience in the semiconductor market in research and business. My background is deeply rooted in analytical thinking, problem-solving, and tran...
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Joyce Lee MD, MPH @joyclee.bsky.social · 15/07/2025
AI Stepped In Where the System Stepped Out substack.com/inbox/post/1...
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Susannah Fox @susannahrfox.bsky.social · 11/07/2025
"One of the biggest challenges is that not only are you learning to keep yourself alive, but you are also having to educate everyone around you" - Alex Durussel-Baker of Diabetes by Design. To combat misinformation, she started subverting famous designs to trick people into learning about diabetes.
3 posters are pasted on a wall above 3 folding chairs. Poster one reads "Type 1 Diabetes" and is in the style of a Beatles album cover. Poster two reads "Rage Bolus" and features a fist holding an insulin pen. Poster three is a stylized portrait of a man with the word "Insulin" under his image.
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Susannah Fox @susannahrfox.bsky.social · 10/07/2025
So excited to see these beautiful, useful resources in the world! I just backed Type 1 Diabetes Companion Cards on @kickstarter.com www.kickstarter.com/projects/884...
kickstarter.com
Type 1 Diabetes Companion Cards
Eye catching card-based toolkits to help navigate the highs and lows of living with type 1 diabetes.
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Susannah Fox @susannahrfox.bsky.social · 08/07/2025
I collect examples of patient-, survivor-, caregiver-led innovations. Please let me know if you have one to add to my list: susannahfox.com/patient-led-...
susannahfox.com
Patient-led Innovation
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Susannah Fox @susannahrfox.bsky.social · 01/07/2025
If people's needs are not being met by mainstream health care and they have the means to create their own solutions, they will. Example: citizen-scientists found that psychedelics work to interrupt a cluster headache and prevent further episodes susannahfox.com/2025/06/27/w...
susannahfox.com
Wow! How? Psychedelic Outlaws
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Susannah Fox @susannahrfox.bsky.social · 01/07/2025
Extraordinary peer-to-peer health care story: "Brazilian women had made a discovery that allowed them to safely have abortions at home, despite the country's abortion restrictions. That discovery eventually spread across the globe." www.npr.org/2026/01/01/1...
npr.org
The Network: Saint-o-tec : Embedded
Part 1: In the mid-1980s, an OBGYN in Brazil noticed that far fewer pregnant women at his hospital were dying from abortion complications. It wasn't a coincidence. Brazilian women had made a discovery...
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Sherrilyn Ifill @sifill.bsky.social · 29/06/2025
Be sure to sit down with @nhannahjones.bsky.social’s latest piece in the NYT magazine. It’s a sobering reality that we should be shouting from the rooftops. (Gift link) www.nytimes.com/2025/06/27/m...
nytimes.com
How Trump Upended 60 Years of Civil Rights in Two Months
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Susannah Fox @susannahrfox.bsky.social · 24/06/2025
"To seek treatment and stick with it, Sturdevant understood, people had to have basic needs like food and housing met and, as importantly, a sense of belonging and empowerment."
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euanashley @euanashley.bsky.social · 14/06/2025
Atul Butte died yesterday. The world lost a giant. A big bear of a man. With a huge smile. With love for everyone. With energy that could power a room. I loved everything about Atul. I loved how he was always happy. I loved how excited he was about science and helping people.
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Karandeep(Singh) @kdpsingh.bsky.social · 16/11/2024
"All the data in the world will not make a difference, unless there are people ready to use it." — Atul Butte, MD, PHD, FACMI 2024 Morris F. Collen Award Winner
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